My story begins with a simple Dr.s visit. Having horrible hot flashes and night sweats it was time to get on some estrogen. Went to see Dr. Becky, everything pretty normal, blood pressure check, ear check, stick out tongue say Ahhh, feel the neck. Whats this? Apparently I had a lump on the left side of the neck about the size of a nickle. What is this? "I don't know" How long have u had it? "I don't know" I am referring you to a dermatologist. I want to get another opinion. Ok.?? Why a dermatologist?? Had the appointment with a dermatologist whom I felt was pretty useless and a waste of money. Dr. Becky touched me more then him! Then he sat there and told his assistant what he thought in medical terms I didn't understand. Ok now what?What do I do with these lumps on my neck??
Whenever I go to see Dr. Becky she always orders some kind of blood work. Check thyroid levels, cholesterol, etc. So I had to go to the girl down the hall who draws blood. Pretty routine. I got a call the next day saying your white cell count is up and we want you to come in a week and do another. Ok another arm prick but not the end of the world. Well this continued for about 3 weeks, each time my count was higher then the last time. I had an appointment set for July 30 to recheck thyroid levels and to see how I was doing with the estrogen, and to find out what was I supposed to do with these lumps in my neck. Will they go away on their own, what are they?? Since my last visit I had found some lumps on the right side also but were smaller. During my visit Dr. Becky checked my arm pits and my groin for lumps, none found. She wants me to go to Jordan Valley Hospital for my blood work this time, since she can get results in an hour. Oh crap, I gotta park, figure out where I'm going etc.
She calls me later that night and says my white cell count is still up, even higher then before. So she refers me to a hematologist. A what? Never heard of a hematologist. Ok get home and decide to google it. A doctor who deals with blood diseases. Ok. When I call to get my appointment they answer the phone
"Cancer Center". I am a little shocked by this but hematologist also work in oncology which has to do with cancer. Before my appointment the doctor wants me to do a test called flow cytometry. They can use the blood they already have from my previous blood draw.
My appointment with Dr. Lagant is Thurs Aug. 15. Ok a little nervous but now maybe I can find out about my neck lumps and why I have a high white cell count. Nurse comes in and says I have to undress and put on stupid gown. Ugh I hate that. Dr. Lagant comes in, older lady very petite, I really like her. Asks me a million questions and more ear checks, heart check, say ahh the normal stuff. She starts to feel my neck and down to my clavicle, checks the arm pit, sweaty and all (wondering did I remember deodorant today?) then the groin. She finds more lumps on my neck and a larger 2 inch one in my arm pit. Then I have do a lovely
pelvic exam since I haven't had one for about 3 yrs. seems to check out ok. then the breast check. I am feeling totally violated now!! Finally she says ok get dressed and I will be back to let you know what I think is going on. Finally some answers.
When she finally comes back which seemed like forever. She has Ed and I sit at the bed on one side and she on the other. She uses the paper on the bed to demonstrate what my diagnosis is. She is doing this writing upside down and doing quite well. First we talk about red cells, and white cells and platelets. Red cells, normal. Platelets, normal. White cell still elevated but not in a danger zone. Then we talk about differential. This is starting to sound like a foreign language now. My neutrophils should be 60% but they are 21%, my lymphocytes should be 30% but are 68%. they are backwards of what they should be. We talk about the flow cytometry test and lymphocytes and monolonal?? more foreign language. Next she writes on the paper what she my diagnosis is. She writes the word Chronic and underlines it. That doesn't sound good. especially when it is underlined!! Then she writes the word Lymphocytic and then Leukemia. What? the word leukemia is reverberating in my brain. I can see nothing but the word on the page!! Leukemia!! Leukemia!! I can see nothing else she is writing. How can this be? Its only a word I've heard described for other people not me!! Everything now is a blur. She is explaining about the numbers they use to rate cancer. Cancer!! What? At this point she estimates me at a I or a II but may change after I have to do more tests. I am still hung up on the word leukemia. Is this real or a bad dream. She also says she thinks my spleen is enlarged. This would explain the bloating and stomach aches I have been having since it is using more space. I need to do a ct scan which will show them what is going on inside. She is talking about disability when I need it she will help me.. What? disability??? Now everything is a really a blur. Once I get my ct scan we can decide what is next for tests. Before I leave they tell me they will call me and set up my blood work and my ct scan. Then its time for me to have my moment and they tears start to flow. I go home and start to do research on Chronic Lymphocytic Leukemia. It is a slow cancer and occurs in older adults. After I get more tests I will have more info. I have been getting on computer and reading everything I can about it.
Ct Scan and blood tests are on Monday Aug. 19 then appoint on the 22nd. More to follow...
Terri I am sure your mind is overwhelmed by all the recent information! You can do this! Just remember to do it one day at a time...you are a strong person! I am here if you need anything. ..even if it is just a shoulder to cry on! I love you!
ReplyDeleteThank you so much for sharing your blog with us! Hang in there! Soon you will know exactly what you are dealing with and will have a plan! There is some peace in that! You are so strong and I know you have it in you to do this! If there is anything we can do to help please let us know! I am home all the time! Sending lots of love and prayers your way!
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